The story of Noah
Something changed in my 30’s, it started slowly. I had worked with computers my entire adult life, long hours in front of the computer take their toll on your body and your eyes so I didn’t think much of it when I began having mild eye pain, I figured it must be the usual strain of overwork, dry air, maybe I’m just getting older.
Soon it became apparent that this pain was not ordinary, the burning pain did not go away when I stepped away from the computer, the glare from office lights and computer screens became unbearable, and a constant use of eye drops didn’t make my eyes feel better. The career I loved and had built from the ground up working with technology and helping people through healthcare was quickly becoming a nightmare as the pain got worse.
I sought out the best doctors I could find in the San Francisco bay area at world-class universities and hospitals, agonizing hours of having my eyes poked and scraped, and dyed and examined all came back inconclusive. Some doctors were clearly concerned that my eye surface looked unusual but weren’t sure how to proceed, others were less supportive saying that they had seen worse eye surfaces, that it “shouldn’t hurt that bad”. As my desperation got worse, it seemed the doctors felt the need to will myself to learn how to live with pain, one day I was told I was going to have to decide if I was willing to “gut it out” and get back to work, because disability would not be an option for someone like me.
By that point I was in constant pain, every second awake I was in physical pain like I had never experienced, I would rarely dip below an 8/10 on the pain scale. I would wear dark glasses and a hat whenever I wasn’t at work to lessen the pain, even a cold breeze or air conditioning would be so painful I would reflexively clamp my eyes shut. I finally found a doctor who took pity and provided me with pain medications, that just made the conversations with doctors worse because they started to assume that since I had these medications in my charts that I must be in their office to try and get more pain meds. Finally, a doctor threatened to take me off all the medications I was on and put me on fluoxetine, he felt that was “the best thing for me”. That was one of my lowest points, but fortunately I fought on and found an advocate in the HMO system. She saw me and on the first visit she sent me home with a letter for the first time officially diagnosing me with Ocular Neuropathic Pain Syndrome. She also provided me referrals to new specialists which would completely change my trajectory.
I had heard of this before but most doctors I spoke with were openly dismissive of neuropathic eye pain, if it didn’t show up in a slit lamp exam, most opthalmologists don’t pay much attention to it. Also most neurologists don’t deal with the eye nerves, so for many this condition falls through the cracks. I traveled to dozens of specialists and read every article I could find, eventually a special diagnostic device called a confocal microscope gave me the magic words I needed: “decreased subbasal nerve density with increased tortuosity”, diagnosis: corneal neuralgia. That gave us a definitive picture of why my eyes are so painful.
Over years of follow-ups with specialists, they made another breakthrough, one specialist had seen something familiar in the spotty pattern in my eyes, she dug through her records to an obscure genetic eye condition called Meesmanns corneal dystrophy. My eyes were creating cysts and those cysts were bursting, exposing the vulnerable corneal nerves. This pattern of damage and inflammation over years, along with my recently diagnosed autoimune symptoms, (autoimmune patients are particularly susceptible to neurological complications), finally painted a picture that made sense.
To this day, I don’t understand how such widespread damage to my eyes and the underlying nerves could happen and not raise alarms with eye specialists, they speculated various different diseases over the years but the prognosis always seemed to be not enough to convince them the pain required more serious interventions. Later on I learned that the DEWS, a national committee on dry eye pain, has changed their protocols to incorporate neuropathic pain, but there are still only a handful of qualified specialists and many still go undiagnosed, forced to fend for themselves.
With this new diagnosis, there was a small glimmer of hope. For years now I had not been able to work, but the final pieces came in time to help my Social Security Disability trial, some of the best medical experts in the country did not understand my conditions, so it was a huge struggle to convince administrative types and claim my disability insurance benefits. But the bigger fight still lies ahead, there are unknown numbers of people just like me with neuropathic eye pain, and the cause of my symptoms is genetic, there is currently no cure and it is so rare that studies and articles are almost impossible to find even now. For me and those like me, chronic eye pain is a debilitating condition and there are only a handful of specialists equipped to handle neuropathic pain, by the time we get our diagnosis we can be significantly disabled by this pain.
A few beacons of hope like the late Dr. Perry Rosenthal and his independent research and a few other “maverick” opthalmologists are all we have, there are no advocacy groups like exist for conditions even as rare as trigeminal neuralgia or Sjogren’s Syndrome. A small group of us has gathered on social media like the Corneal Neuralgia Patients group on Facebook in support of each other, and I am constantly amazed by the strength of the others who are fighting every day.
I hope that I get better and that breakthrough I need comes through, but more than anything, I hope that the next Ocular Neuropathic Pain Syndrome patient doesn’t have to go through what I did, fighting searing agonizing pain and vision loss and also fighting doctors that don’t believe patients with invisibible disabilities. And I hope that the medical community takes steps to help patients like me and others that are falling through the cracks with rare diseases